Attitude to RA & facing the future

Being diagnosed with and living with a chronic disease such as rheumatoid arthritis can be difficult to come to terms with and adjust to. Several people were determined not to worry, or optimistic that advances in medication and joint replacements would improve their lives. Others hoped that the disease might 'burn itself out' or a cure would be found. Although there have been real advances in treatments there is currently no known cure and some people were understandably concerned about their future.

People viewed having a chronic disease in different ways:

Learning to live with RA

One woman, diagnosed over 40 years ago, summarised her feelings on how to live with RA. You could either 'live with it; fight it; or give in to it' and she felt the first option was best which meant recognising your limitations.

Retired clerical worker, widowed with 2 surviving adult children. Diagnosed whilst living abroad with husband and 3 children. Returned home to more moderate climate.

As I said earlier on, there are three ways you can deal with arthritis and I've found this out personally when I first started this. You can be very angry and fight it. That only lasts for a certain time because the only one that's getting hurt is you. 'Cos the more of a temper and, and that you get in the more you create, 'Ooh that hurts', sort of thing.

The other thing is you can give in right from the beginning and you can say, 'I can't do that'. And let everybody else do it for you and give no thought to the fact that they've got their lives to live and they shouldn't be feeling that way that they've got to do it for you. And the third thing is to come terms with it and don't live against it, live with it. And when you get a bad pain just sit, whatever suits you. If you get a bad pain and painting the wall gives you relief, go and paint the wall. If you find, like me myself, the only way to get over it is to just sit quietly and rest and it will go.

People suggested that adaptation, taking control and learning how much they could do without overdoing it was the answer. One partner felt that being flexible, to accommodate his wife's changing condition, was the way to 'just get on with your life'. Others with RA said, 'Don't give in to it' although some wondered, 'Why me?' Many felt lucky because; they had lived many years able to do activities they enjoyed without the disease; they felt better now their disease had been diagnosed and was being treated; they had RA and not something they considered worse.

And yes, perhaps my wife is a little bit more dependent on me for certain things but, certainly now, since she's been diagnosed and things have improved so much, that has certainly become less and less. And in fact now we've changed our routine again slightly so we tend to eat early evening so I come home from work and [wife's name], my wife, will have cooked already. And we all sit down together as a family and eat rather than her just cooking for my daughter and then me putting her to bed and then me cooking and we eating later in the evening. We tend to now eat all together as a family, which is great, and really good fun and I love it.

But it's only recently that my wife has felt able to, to actually do that, and feel confident with her mobility and, and abilities to do that. So, so that's been a benefit, of it being diagnosed and going on the drugs really. So it's been a flip, there's been a flip round from, from before where my wife was quite dependent on me doing a lot of the cooking, which was fine because I was used to it anyway, to her now doing quite a bit and me being able to come home from work and not have to have to worry about it too much. And it gives us more time in the evening then, because everything's all done and dusted before our daughter goes to bed so as soon as she's in bed we're able to get on and do things that we want to do together in the evening.

But it sounds as though you've been able to be quite flexible?

Yes, and I think you have to be. You can't be too rigid about these things because you have to take every day as it comes. And certainly with, with the way my wife has been, some days are good days and some days are bad days. Today, fortunately, she hasn't too bad but these cold days can be, she finds quite difficult and I know that if it's been a cold day, that she'll have probably had, found it quite a struggle because it effects her. So I know, in the back of my mind, that yeah I'm probably going to have to do more when I come home but I'm fine, I'm flexible with that. Just get on with your life, don't you? You have to do what you have to do and I don't mind. You know it's, I've always been quite adaptable at dealing with situations and I feel, just feel, you have to, really.

Coming to terms with having RA

Many people had taken a while to come to terms with having the disease and some suggested that they might have been 'in denial'. A 28 year old woman, diagnosed at the age of 14, said that she still resisted the idea that she was 'disabled'. Others did not visit the doctor or played down their symptoms because they didn't want to admit that something was wrong.

And it's not been the sort of best, if I say the last two years haven't been the best in my life basically, it seems to have, things have got a lot worse, but I'm a lot better now, I feel a lot better now with actually packing in work and I've actually, it's taken me so long to actually come to terms with having RA, it's only probably the last couple of years, when I've actually been honest enough and come to terms with, that I have had rheumatoid arthritis I have had a and I feel a lot better for it now actually. But before that I just could not come to terms with it I thought you know it's not me this, I, I don't get ill and unfortunately I was and I just didn't, didn't come to terms with it at all.

Did you think it was going to get, you know, did you think you would get back to sort of normal as it were, or you just couldn't accept, it was just sort of denial or?

I think it was denial really, because I'd always been a person who did a lot of running and a lot of exercise, breeze into work like and just blast it you know what I mean, cos being a chef you have to motor and I used to just do it for fun basically, and then all of a sudden like, this thing comes along and like zap! It just knocks you back straight away and it just took me, taken me so long to actually come to terms with having an illness, but now I feel fine about it, and I can cope with it a lot better.

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Profile Info

Age at interview:

22

Sex:

Female

Age at diagnosis:

11

Background:

Sarah lives at home with her parents and works part-time. She is planning to go back to college to do an animal care course. Ethnic background/nationality' White British.

When I was originally told, I didn't actually understand. All I remember was my mum bursting into tears and getting very upset. Couldn't understand why, at my age, that I had something that, very commonly, gets mistaken for something that only older people have.

I didn't know what was going on. I, to be honest, at that age, I didn't actually care. I just wanted to get out and go and see my friends. That was all I wanted to do. When the medication started, I admit I made life, life very difficult for my parents. I went into a denial. I didn't have anything wrong with me. I don't have to take this. I don't have to take medicine that's going to make me feel sick. I'm just like anybody else and I did go through that stage for quite a long time.

It was a good year or so later that I eventually, accepted it and sort of behave myself, because I did misbehave. I didn't take the drugs I was given. I sort of messed around with it. I didn't want to accept it but.

It was also made difficult at school. I had just started high school and I couldn't do PE or games. So, whenever I had PE or games lessons, I had to go and sit in another classroom with about six other children that had learning difficulties and so catch up on homework, and things like that, because I just physically could not do what they were doing. Which in itself was a constant reminder all the time. You know, why am I sitting here? Oh yeah, because I can't do what they're doing and.

But eventually, I grew to learn to accept what I'd got and deal with it, so I was very willing to try anything new that came my way, to try, you know, to see if it made any difference. Thing is, I've got over my fear of needles [laughs]. Had a major fear of needles and I've actually got over that as well. I think it's made me a stronger person really. Yeah.

Some people continued to hide the fact they had RA. Striving to feel as 'normal' as possible they tried not to complain about their symptoms and avoided anything that might label them as disabled, such as parking badges or wrist splints. However a few people felt that having bruises etc after an operation were an outward sign of their RA for others.

Helping others

Several people wanted to help and support others diagnosed with RA by projecting a positive image and showing that, although some aspects of their life may need to change, this could actually improve it. People provided support by setting up support groups hydrotherapy sessions; demonstrating specialist equipment and talking with people newly diagnosed or children with RA.

Concerns about the future

Many worried about the future. One woman said that she was trying to prepare herself mentally for more disability and another felt that her main problem was maintaining her artificial joints. Some found it particularly hard to cope with the unpredictability of the disease and worried if they would be able to cope with future 'flares' of their arthritis. Not being a burden to others was important although many accepted that the time might come when they would need help. One partner said that he felt anxious that his wife may become bed-ridden in great pain or that they would need to move house. Unknown long-term effects of drugs, damage to joints, needing to use a wheelchair and the increased risk of heart disease were also causes for concern.

Housewife, divorced with two children born after RA onset. Symptoms subsided during 1st pregnancy, then got worse and no remission in 2nd pregnancy.

How do you think your rheumatoid arthritis will affect you in the own future?

Oh, that's the most terrifying thought. That's the thought that really depresses me because it's progressive, degenerative, it ain't getting better, it's only getting worse. The best I can do is to try and not let it get any worse. Well there's a limit to how much I can do. The disease itself will progress and the best I can do is to keep my body as fit as possible and take care of myself, rest enough, exercise enough back to the hydrotherapy you see.

And the fact that this year I've had to resort to a wheelchair to go round exhibitions and only then you know, with my daughter pushing, or someone, well I've not actually ever asked anyone else to do it, That's quite a big step for me psychologically, and it feels as though it's, it's, that's the way it's going. I'm getting less and less able to do the things I not only that I want to do but need to do. So yes the future is a frightening place for me.

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Profile Info

Age at interview:

51

Sex:

Female

Age at diagnosis:

27

Background:

Teacher, retired on health grounds, married with 2 adult children.

So, in the future do you think it, what do you think the problems will be?

I think the major problem now will be maintaining the artificial joints. I, I think that's going to be the main thing. It's like the hip that had to come out and be re-done. It's, it's a question of it, having to have the artificial joint, I mean my hips and knees in particular, to, to make sure that, that, that they're functioning still and to, to pick the right time to have them re-done. I mean the right hip is showing signs of, of failing and the right knee but, the right hip actually feels perfectly normal to me, has no pain whatsoever and I can walk on it normally.

So, I regularly have it monitored at the hospital and x-rayed and the decision there between myself and the surgeon is that if it carries on feeling OK and doesn't change on the x-rays I can carry on indefinitely like that but if there's any sign, major sign to me that anything's getting worse or if the x-ray shows more damage then I have to go in immediately because otherwise it makes the surgeon's job that much more difficult and my chances of a, a good operation to re-do it are reduced if I don't take a sensible attitude to the operations.

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Profile Info

Age at interview:

63

Sex:

Male

Background:

Partner' Environmentalist (retired), married with 1 adult son and 3 adult step children.

Well, I'm anxious a lot I suppose. And I have great confidence in her ability to, you know, she's a fantastically strong character and she will, she will always do the kind of sensible thing and as long as she isn't going for sort of long walks and you don't where they are without, without the mobile phone, in case she had a fall and, you know, couldn't get back. But otherwise she's extremely capable.

Yet I do feel anxiety clearly about the fact that we have a large house and at some point if it got bad enough we'd have to sell this and move out and it would be an upheaval and an adjustment and things we'd rather, you know, we had thought subject to the disease we would much rather defer. I very much hope to die in this house.

But the, the anxiety about, about moving and about the possibility of, of her deterioration, the condition leading to, to a state of, as it were, really deep paralysis and, and deep dependency. I mean, she might be bed-ridden, for a decade you know and in great pain all that time and that would be an extremely unpleasant situation to have to deal with. But if that's the hand that fate deals us, well we'll just make the best of it.

However many people had learnt to live each day to the full, to 'live for the moment' and to value their good days. A few didn't think about the disease very often and tried to forget about it. Several said that maintaining a sense of humour was essential.

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